My name is Mairelys Zayas, when I was 19 years old I was diagnosed with a rare lung disease called LAM. Doctors say is genetic and I've had it since birth but I never had any symptoms until I was 18-19.
I started feeling very tired and short of breath often, also I had really bad back pains, turn out I had a neumothorax first in my left lung that led me to the hospital and that's how I found out about my disease. The doctor inserted a tube in my lung to remove excess air from the lung. They discharged me and a couple of months later the same thing happened on my right lung but this time I saw a different doctor that suggested I had surgery to seal the pleural space with talc so the pneumothorax wouldn't occur again in the future, so they did surgery on both lungs.
After that day I continued on with my life and went back to my normal activities but that didn't make my disease go away. I had follow up appoinments with a pulmonologist at the University of Miami, I got on a medication to help control it but my disease was already too far along so the medication I was sent wasn't working or helping me at all. The doctor came to the conclusion after studying tests results and due to my history that I needed a double lung transplant.
After several months my condition worsen a lot I ended up at the hospital many times. I was put through many tests and was finally put on a transplant list. After I was put on the list I went home and 13 days after I was called with the news that they had a donor for me. My mother and I rushed to the hospital to start prepping for surgery. It was nerve racking, I had surgery and the transplant went great. I spent a month at the hospital and then went back home. The first three years was good but hard because it was emotional and a big change in my life. Suddenly my life consisted of being extra careful and taking up to 30 pills a day and I think that was a revelation for me because I've always been healthy and I've never had to take so much medications in my life, but I was thankful to been given another chance to change my life.
A few months ago I found out my lungs had been failing and again the doctor informed me that I needed another transplant so I'm currently on the list again for surgery. I have to say its been hard this time around because sometimes I get sad and scared and I wonder why this is happening to me again but then I realize that I'm not alone and that I am not the only one going through this so this is my story and this is why I decided to join this group.
First published: October 10, 2019
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